I get political again...

I get so angry when I go by the clinic on Sudley Road - the same people who run on a "pro-life" platform cut the social safety net for the poor and disabled every chance they get.  They debate the right to education, deny community based care, preferring locking people away in institutions.  How is that pro-life?  All politicians take money from big lobbies like health insurance and then they hem and haw when confronted with actually providing coverage and care for things like autism or other developmental disabilities.  The medical establishment works less for a cure or treatment for my son and more for diagnostic testing so people like Jimmy won't come into the world.  I guess it is cheaper and easier.  Yet no one acknowledges this, certainly not those pro-life protesters.  You can't say abortion isn't a political issue - I have heard that one before.  The 40 days of life protest that happens twice a year - before Easter and before Election Day.  By timing alone, they make it very political.

I post this not from the "I'm absolutely pro-choice" - the Jimmy experience has been life changing.  The world would be a sadder place if he wasn't in it.  Life is precious.  I firmly believe that.  Yet abortion is often what happens if a disability is discovered gestationally.  And the people who are out there are tacitly supporting this political agenda to deny care and to kill people who are considered "unsuitable", whether or not they realize it.  Why they aren't standing out at town halls and demanding moral consistency on this is obscene to me. 

One of these days, I am going to stop with Jimmy and I ask them about this. 

My son: one of the 47%

I am completely depressed at the thought of Mitt Romney winning this election.

I doubt he is a horrible man, but I believe he has horrible plans, horrible ideas for people like Jimmy.

Jimmy is one of the 47% Governor Romney referenced in his video.  He gets assistance from the government through Medicaid.  He is on one waiver and on the waiting list for the appropriate one that will provide long term care to see him through the rest of his days on this Earth.  The waiver that he will ultimately get will potentially provide him with supported, directed employment or, if he is not capable of gainful employment, day services to allow myself and his father to continue to work until we can afford to retire.  It will provide in home support to assist us with his care.  All of these things will come at much less to the American taxpayer than institutionalizing him, historically the option for people like him.

He would like to block grant it to the states and let them do as they will, without levels of care or maintenance of effort language.  Virginia - let's say my state does not have the greatest history of providing needed care or taking appropriate measures to ensure these needs are funded.  It took entering into a settlement with the Department of Justice for violations of Olmstead to get them to do anything.  And still there is a waiting list several thousand deep for these waiver services.  That is where we are currently.  We are fortunate to receive supplemental support right now.  This support will not be enough, however, to allow me to continue working, for example, when he graduates from high school.

Even though the Bible teaches us to help people like my son.  There are several passages about the needy in the Bible, but this is the one that sticks with me, Matthew 25:40.

"And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it to me."

We have a responsibility to help those who can't help themselves.  My child is one of those people.  That isn't do say that we don't pay medical bills, that we don't or won't pay to care for him, but the fact that long term care for disabled and medically fragile is not covered by traditional insurance and is far beyond the needs of middle class families.  We contribute to this system through our taxes - income, payroll, every tax you can think of - and yet Mitt Romney doesn't think our children are worth helping. That is not a reach or stretch in my opinion.  It's a fact.  How can you propose the cuts he wants and not think that?

I read a great piece in the New York Times regarding what it means to be prolife.  By this definition, I am prolife - I am against abortion, against the death penalty, and for helping those who enter this world in need.  Governor Romney is not.  I think a lot of people are not, because it is a higher standard than most people measure themselves by.  Respect for life does not begin and end at the womb.  You would be shocked at the number of times people have made comments to me about Jimmy.  Certainly people like Delegate Bob Marshall make broad, stupid comments all the time (God's vengeance, my ass), but the number of people that ask everything from "what did you eat/drink/smoke while you were pregnant?" to "didn't you have prenatal testing" to saying that they "aren't sure if educating disabled kids is worth" the expense (a local elected official) to one person who said that I was irresponsible for bringing a disabled child into this world and that he tax dollars shouldn't have to go to caring for "that," pointing at him in his stroller like he was a pariah and not an 8 year old kid.  All of these things have happened to us in public.  Yes, really.  (That's doesn't even get to the R-word episode at Sea World three years ago...)  And no one ever wants to get me started on the writings of Ayn Rand and the love that Rep. Paul Ryan has for them.

After all this, you think I would be less shocked at someone like Mitt Romney and the fact that his ideas are so popular.  But I still am.  I can't believe I am sitting here a week out from the election as completely depressed as I am.  I know people vote for other things and no one votes for the sake of a kid like mine unless you have a kid like mine.  But I feel like I am watching his future slip away as he is broadly lumped in to this whole 47% and people seize on it like he is some sort of intentional leach on society.  He isn't a victim, I am not a victim.  Jimmy was born the way God intended.  He is beautiful and loving and perfect in a very sad and cruel world.  How can you believe in God and not want to help "the least of these, my Brethren"?

I kind of resent the fact that I don't have a choice when I go vote in a week - I have to vote for Democrats because Republicans have taken this stand against people like my child.  It isn't solely a Mitt Romney thing - it's a Republican party thing.  Why are these people, who seem to think they have cornered the market on the "respect for life and God" so entrenched in the notion that people aren't worth helping.

(Yes, I am writing from a perspective of pure emotion.  I think logic left me after the first debate.)

CNN Romney/Ryan Medicaid article

From CNN: "An Urban Institute analysis of Ryan's budget proposal from last year found block grants would lead states to drop between 14 million and 27 million people from Medicaid by 2021 and cut reimbursements to health care providers by 31%."

Ayn Rand Fanboy for VP

Paul Ryan loves her.  She believed in eugenics and "Rand dismissed the feminist movement as "false" and "phony," denigrated both Arabs and Native Americans  as "savages" (going so far as to say the latter had no rights and that Europeans were right to take North American lands by force) and  expressed horror that taxpayer money was being spent on government programs aimed at educating "subnormal children" and helping the handicapped." (Article here.)  I could have stomached Romney before (he might have been a good president), but with Ryan, I see no future for my child or our family.  I have already had people express these sentiments to me (strangers and acquaintances) before, that my son was a waste of tax money, that he should have been genetically testing and dealt with.  With Ryan, I am starting to feel a little like "The Handmaid's Tale."  The one thing I have taken from this weekend's happenings: we need a third party in this political system that represents the center thinking and not the extremes.  We need a little sanity. 

Obama and Romney Need to Adopt Autism Platform

The Autism Society of America has met with Mitt Romney's campaign and will be meeting with President Obama's regarding a platform of policy ideas to be supported by both campaigns.  A campaign's ability to adopt these idea in total will personally be my deciding factor for my vote.  I encourage other families of children with autism to insist to both campaigns that support our children, our community of self advocates, and our families living with autism.  I would also encourage anyone running for national public office (I'm looking at you, Congress) to adopt this platform as well to affect meaningful change for people like my son.


From their website:


The Autism Society encourages each presidential candidate to support the following ideals:

1.  A person living with autism or another developmental disability must be assured the protected right to quality education, employment, housing and services. This right must be recognized by federal and state governments. 

2. Medicaid funding must not be cut, as it is the primary financial support for individuals with developmental disabilities. Reducing Medicaid funding will drastically hurt those individuals whose lives depend on Medicaid’s health insurance provision and community support funding. 

3. A person currently receiving Medicaid for community services should be able to continue to receive that support when he moves to another state. No individual should be denied the right to move to another state due to a job or support need.  

4. States should be allowed greater flexibility to use federal funding for outcome-based care and must be required to show measurable progress. The Autism Society defines progress as advancement toward self-sufficiency, independence and autonomy. 

5. Autism must be treated as a whole body condition. Health insurance companies must provide coverage for other services in addition to medical treatments, such as behavioral therapies, which are often very expensive but can have very positive outcomes for individuals on the spectrum. 

6. Individuals and families living with autism or another developmental disability should be provided tax savings or credit opportunities to place money in an account that can be used for services they need.  We strongly urge that the passage of the ABLE Act be a priority of any person seeking the office of President of the United States.

7. Bullying and restraints and seclusion that harm students at school are very serious issues that need a national solution right now. 

8. The high unemployment of adults with developmental disabilities must be a priority to be addressed by government agencies and the private sector. All individuals should have the opportunity to obtain meaningful employment based on skill level.

9. Federal housing, justice, employment and other government  programs that are for the general public should be required to prove they do not discriminate against individuals with developmental disabilities. 

10. Other government agencies and departments, and not just Health and Human Services,  should have a seat on the Interagency Autism Coordinating Committee, which brings together public and private entities to coordinate autism services and support programs nationwide. The Autism Society urges this council to address the following needs: transitional services, living support, the growing socioeconomic disparity preventing people from accessing a diagnosis and vital autism services. All individuals with autism should enjoy protected civil rights.  

DOJ Settlement in question???

A few months ago, I blogged about the DOJ settlement with Virginia regarding its institutions and waitlists.  The settlement has not been signed by the judge yet and several parents with adult children in training centers have sued to block the settlement.  Judge Gibney has asked for public comment.  I drafted a letter summarizing why I think the signing the settlement is important to my son and our family.  Cut and pasted below.  If you have concerns regarding the settlement, I encourage you to write a letter to Judge Gibney.

Honorable Judge Gibney,

            My name is Rachel Kirkland.  I am the mother of Jimmy Kirkland, a ten year old with moderate to severe autism.  We are on the IFDDS waitlist, sitting right around 647.  While Jimmy is not cognitively disabled, he is non-verbal.  He suffers from hyperactivity, anxiety, and is diagnosed with partial complex seizure disorder.  He is what we call a runner, the kind of child that slips off if your back is turned.  He is a client of Project Lifesaver in the Prince William County Sheriff’s Office and wears a Lojack bracelet at all times.  He is temporarily served under an EDCD waiver that really sustains him in our home, which is our greatest wish. 

We cannot manage Jimmy’s continued care in our home and community without waiver services.  There are additional hours and services that we need in the IFDDS now and certainly in the long term.  When he graduates from high school, if he doesn’t have the needed services in place, either my husband or myself will have to leave our employment long before retirement to care for him.  An institution, for someone like him, isn’t a safe option.  He has no boundaries and limited communication skills.  His elopement issues would likely not be managed by supervision and Lojack, but by overmedication and restraint. 

In Jimmy’s current setting, he is supervised at all times.  Moreover, he is a member of the community, participating in not only school, but also recreation opportunities such as adaptive swimming, Miracle League baseball, and therapeutic horseback riding.  He likes to go to Target, McDonalds, the park, and the library.  He is better known in the community than his gregarious eight year old brother Jacob.  Most importantly, he is a valued and loved member of my family.  He is adored by his brother, father, grandparents, aunt, uncle, and cousins.  As his mother, I do not think my life truly began until the day I was privileged enough to bring him in this world.  My children are the best thing that ever happened to me and my experience with Jimmy has shaped my life into something extraordinary.  As difficult as the journey has been, it has been a blessing.

We wholeheartedly support the Department of Justice settlement.  Jimmy shouldn’t be ripped from his community and family for lack of appropriate supports and care in a community based setting.  Yet that is a future that he faces unless Virginia commits its resources to creating this care.  It is Jimmy’s right that he continue to be supported living in his community.  Not locked away, not restrained, not hidden from view for convenience.  Please sign the DOJ agreement so that Jimmy and others like him might continue to live a safe, happy and meaningful lives in their community, near friends, family, and love.  If you want to see what it looks like, please feel free to come up for a visit. 

I thank you for your time and consideration.

Sincerely,

Rachel Kirkland

What a week...

The US Department of Justice came to a settlement with Virginia on its care of the developmentally disabled.  I watched this issue closely as I had some limited involvement with the investigation on the waiver waitlists - it took me two years to get on the IFDDS waiver waitlist and I had to drive more than an hour away to do it.  Turns out that I got some misinformation, but this is a process that was fraught with it in a system that is woefully inefficient.  I don't know how long it will be before we get help - they are making 450 slots (the minimum amount) over the next ten years and we sit about 200 slots after that until his number is up.  But it was nice to be in a room in Richmond with so many advocates and families elated for the change.  I want to keep Jimmy near me, even as I grow older.  I don't want to see him in an institution.  His future is still hazy to me - I don't know what it will look like, but to not see an institution as the most likely option is somewhat of a relief.

I think this weekend is defined by the probable loss of a friendship of longstanding.  I love my friend dearly, but I have been hurt badly.  In large part, that is due to how I chose to take the slight.  That my sensitivity, my reaction, my issue.  But when you look at something and it starts to feel like a pattern... how many times do you live with the sting before it starts to burn?  I don't have much of a social life and have many more acquaintances than I do true friends.  I do not taking the thought of ending any relationship lightly.  I wish I had something more poetic or thoughtful to say, but... this sucks.

Miller Touts His 100% Small Business Voting Record on the Backs of Autistic Kids

I always start anything about Jackson Miller by saying that even though I don't agree with him, he is one of the more personable and accessible people in the General Assembly.  When kids in his district make Honor Roll, they get a letter from him.  Jimmy did too.  At one point, he supported mandated health insurance for autistic children.  I assume it must have been party or donation or something, because he voted against the insurance mandate last year.  He now touts his support of small business instead of families of autism, which is sad, because he knows several of us.  Mercifully the bill passed... even though it didn't cover Jimmy, it is something for children of the ages between 2-6.

I am not in his district anymore, which is sort of mixed blessing.  He is competent.  He is direct for the most part.  When he is being political, he will tell you why he is.  That's a whole lot better than many politicians.  But I wish Jackson's heart could be as good in Richmond as I know it is up here in Manassas.  That's my biggest gripe about him.  Maybe someday he will be part of expanding the coverage for children with autism.  Maybe someday he will see Jimmy again and be moved to help him.

Justice Department warns Virginia of suit over failures

From the Richmond Times Dispatch:

"Sent to Gov. Bob McDonnell late Thursday, the long-anticipated report gives the state 49 days to respond favorably to a litany of adverse findings affecting five state institutions housing 1,100 individuals; but it also draws attention to the condition of 8,600 other people in the community served by money from federal care waivers and to 6,400 others waiting for help, 3,000 of whom are regarded as critically in need."

Jimmy is on the IFDDS waitlist.  After reading the report, I would rather die than have him at one of the training centers.  He is no criminal.  But the cannot cut current services to fund a few more waiver slots, as they have been discussing.  I think DOJ will have a problem with that as well.  All during budget season.  Timing is everything.  

If you want to get yourself angry, read the comments on the article.  There are some really ugly people in the world.  They like to hang out on the web.  

Donations to people who voted against the autism bill...

At least the big ones in the House of Delegates.  Kind of interesting....

Here's a list of the "autism deniers," how long they have been in the House of Delegates, and their haul from the health care industry:

Rob Bell (R-Albemarle, 2002-2010): $55,820
Dickie Bell (R-Staunton, 2010): $10,747
Ben Cline (R-Rockbridge, 2002-2010): $$57,498
Johnny Joannou (D-Norfolk, 1998-2010): $14,200
Chris Jones (R-Suffolk, 1998-2010): $263,683
Steve Landes (R-Augusta, 1996-2010): $129,175
Dave Nutter (R-Montgomery County, 2002-2010): $119,182
Chris Peace (R-Hanover, 2006-2010): $82,384
Brenda Pogge (R-York, 2010): $$13,350
Lacey Putney (I-Bedford, "forever"): $101,522
Roxanne Robinson (R-Chesterfield, 2010): $27,865

That's not to say that the others haven't gotten lots of loot from health care, just that the industry didn't make it to the top of their contributor lists. For example, Greg Habeeb (R-Roanoke County, 2010) pulled in $21,266, while Lynwood Lewis (D-Accomack, 2004-2010) got $52,479.

My delegate, while he has several contributions from the healthcare industry this cycle (enough for anyone to be suspicious on his change of heart), is nowhere near the top of list.  Corruption is a word I hear bandied about a lot - most when one side of the political spectrum doesn't like what someone on the other is doing.  But I think that when you have this much money passing through the political process, it leads to a systemic corruption.  And if you look at the affliations, it has infected Democrats, Republicans, and Independents.  That needs to be changed - it is immoral and everything good government shouldn't be.

Something Jackson Miller Did Right in Richmond

Because he in person is a nice guy, I wanted to find something positive to say, even though I am cheesed off about the autism thing.  Thanks to a friend, I didn't have to search very hard.

HB 1476 Sexual abuse; limitations period.

SUMMARY AS INTRODUCED:

Torts; sexual abuse; limitations period.  Extends the limitations period for actions for sexual abuse committed during the infancy or incapacity of the abused person from two years to 25 years from the time of the removal of the infancy or incapacity or from the time the cause of action otherwise accrues

A Virginia Autism Bill Update

"Del. Jackson H. Miller (R-Manassas) said he opposed the bill because it only applies to some businesses, it would help a limited number of families and he doesn't believe federal law allows the state to cap annual costs at $35,000. He later asked Attorney General Ken Cuccinelli II (R) to determine whether federal law allows the General Assembly to cap costs at $35,000 a year. Cuccinelli has yet to issue an opinion.

And, considering Howell's power over bills and committee assignments, other members of the Republican-controlled House courted danger by trying to amend or kill the proposal, while the conservative group Americans for Prosperity targeted Howell (R-Stafford) in recorded phone calls statewide. The Virginia Tea Party also attacked the bill.

"This creates a slippery slope to a nanny-state type of government, eroding away the freedom of choice and autonomy that businesses and individuals enjoy today," said Mark Kevin Lloyd, chairman of the Virginia Tea Party Patriot Federation.

The Independent Insurance Agents of Virginia, Virginia State Chamber of Commerce, National Federation of Independent Business and the Virginia Association of Health Plans also remain opposed, citing the expense of another mandate."

Not shocked about the Tea Party, given a member told me that Jimmy was a drain on his tax dollars and should have been aborted after prenatal testing.  Genius, that one... Not that autism can be detected and, hey, I thought the Republican Party was pro-life?  Jackson Miller.... wasn't it three years ago that he co-sponsored autism legislation to cover children up to 18?  Or was that two years?  He knows the political reality - that what needs to get through isn't going to.  Nothing is going to get through Richmond, that Richmond that puts business interests above the needs of children; paid, well funded lobbyist-donors above the needs of voters.

This bill won't help Jimmy.  That has sucked a lot of my enthusiasm out for it and I am heartbroken for my son and the other kids this won't help.  I admire those women who have put so much effort into, knowing their kids aren't going to be covered either - they are better people than I ever will be.  Autism is a medical condition.  ABA is a therapy that helps.  This bill's passage still needs to happen to help families with young children who need to get intervention today.  It will save expenses in lifetime care and education - not the lobbyists principal interests, but Virginia's tax dollars, which the people in Richmond are supposed to be stewards for.  Show a little vision here.

Insurance companies won't do the right thing unless you force them to do so.  That isn't a nanny state - if that dude from the Tea Party needs a Viagra prescription, his insurance covers it in Virginia.  Why are impotent men more important than autistic kids?

Disappointing...

That my delegate isn't supporting this autism insurance bill.  Granted, I too don't think it goes far enough.  It won't help my son.  But Richmond has proved year after year that they won't think big on this.  Helping some kids, little kids, is better than driving more parents into financial ruin as they quest to get the kids the help they need.

A person representing my community should put the health and well being of children first, regardless of party...

Just a reminder...

Happy New Year

Missouri has autism insurance coverage today.  They also have fines for texting while driving.  Come on Virginia, get with it...

And the TSA makes a 4 year old disabled child take off his leg braces to walk through the detector...

The stupidity is mind numbing!

TSA strip search of a child just got worse - he is autistic...

Not that I like believing Glenn Beck on anything ever, but according to this the child never tripped the detector and was autistic:

"Glenn Beck had Luke Tait, the college student who took the infamous video of the TSA agent doing a pat down of the shirtless little boy, on his show this morning to discuss the incident at the airport. During the interview, Beck said that he learned from a ‘refounder’ (Congressional insider) that the little boy didn’t actually set off the metal detectors as the TSA reported, but rather the boy had on a baggy shirt that caught the attention of the TSA and thats why they wanted to do a pat down. Beck said he also learned a detail that hasn’t been reported yet, that the little boy has autism."

The video on the page goes into detail.

These people are awful... really.

Child strip searched by the TSA... this weekend!

The boys will not fly until this nonsense is resolved.  Can you imagine Jimmy having to submit to this?  And he gets hand searched every flight because he can't walk through the medal detector by himself.  Jacob would put up a lot of resistance if he was selected to.  He wouldn't let a stranger, any stranger, run his hands all over him, even with me there. 

I am far from a conservative or a libertarian, but honestly, we lost too much after 9/11.  People don't need to be molested or stripped at airports.  I know we need to keep our skies safe, but not from eight year olds. 

Off the backs of the disabled...

And surviving children of deceased parents, the Tea Party would make their cuts on the most vulnerable.

"Many conservatives and Tea Party candidates, including Michele Bachman and Joe Miller, are hoping to reform Social Security "entitlements," beginning with those recipients who are under the age of 55. This would effectively cut Social Security benefits for people who are either disabled or a survivor of deceased parents."


Can't mess with anyone above 55 without pissing off the AARP.  But the disabled.  Nobody sees them.  


These people are Godless devils.  Bring back the moderates.  

Thinking of Sharron Angle, those who thing Autism isn't real, and people with disabilities shouldn't be brought into this world...

About the eight minute mark, please...